Dee -My Crazy Year
January, February, so far so normal
Well, 2022, was not the year that I expected. With Covid restrictions easing, I was hoping on meeting up with friends and family, pubs, restaurants, gigs, travel in Ireland, get on a plane, travel in Europe, parties, play badminton and tennis and of course, getting back into the office. But, on 2nd March, my life changed forever after a simple routine colonoscopy.
Don’t worry, this piece is not going to be a teary piece, there will be medical jargon (boring) but Dee’s good (crazy) sense of humour.
January and February, I was just doing normal stuff, work, badminton matches, meeting friends, six nations and so on. But, I was losing weight and keep going to the bathroom too often. On Valentine’s Day, I went to the doctor, I was hoping she would give me some antibiotics to clear the upset stomach. But nope, not my luck (the year before, the doc diagnosed me with IBS (Irritable Bowel Syndrome) so my new doctor wanted to double check that everything was in order so I was going for a colonoscopy in the Mater Hospital.
Told to expect the worse
Colonoscopies are not fun. The night before you must drink some lovely milkshakes from 6pm to 11pm and drink lots of water. Then, you get your book and spend time on the toilet and embrace it. I went to the Mater for 7am (my first time in hospital since 15 years when I got my tonsils out) and met Dr Ailin Rogers (aka Captain America) who gave me some drugs to calm me down and knock me out!!
When, I was recovering from the colonoscopy, Dr Captain America called my dad. I woke up to tea and toast, amazing food when you are so hungry and groggy. Dr Captain America called me in the side room and suggested my dad to come in and I had three nurses in the room. She told me that there is something wrong with my colon and to expect the worst.
She was hopeful that they have caught it early. Biopsy was sent to the lab and I would get the results in a few weeks but I had to go for a CT scan and CT colon scan in next few weeks. Honestly, I was drugged up and didn’t take in the news properly hence Daddy was there. So, in March, I kept to myself as much as possible because I was an emotional crazy person, anything would trigger my tears. So it was great that I got out of a recruitment campaign, online meetings, heading into the office. But I had my scans in late March.
Plan A and Plan B
On the 28th of March, Dr Captain America rang me at 6pm after analysing the scans and biopsy to confirm that I had bowel cancer but it has spread to the liver but the priority is to remove the tumours in the colon and my lymph nodes. Also, surgery was going to be decided on the day. She was hoping for key hole surgery with no stomach bag but she might have to do open surgery with a stomach bag. Just what I wanted to hear before my first major surgery…but the good news that I was going to have my surgery in the Mater Private.
I woke up after the surgery and checked my tummy. I had no stoma bag and I went back to sleep. Captain America called into me and told me that the surgery was successful. But, she looked into my liver and there is cancer there. So, I will get an MRI next week and meet the liver consultant.
Recovering from bowel surgery was grand. I had my own room which was amazing. Nurses and Docs were super nice. On Monday 4th April, MRI scan, I had to fast for the scan as they need clear images of liver. Finally, after midday, I was brought down to my MRI scan. I never had one of these before but it is a noisy machine. It is like a broken washing machine and computer game mashed together. They give you earphones but still super noisy. That evening. I was supposed to get my results from my new avenger – Iron Man, Dr John Connelly, but he was called away to surgery.
Tuesday was my getting out day. But I had to wait for Iron Man to talk to me. At 6.30pm, Iron Man gave me the worst news in the nicest way. So the tumours are all over my liver and they can't operate. So, the plan is chemo for 6 rounds over 3 months. He was nice and told me about the advances in Toronto where he goes every year, he told me that don’t google life expectancy for stage 4. He politely told me, every person has a different reaction to chemo and, hopefully, your body will respond. If not, we will come with Plan B and you will have a good quality of life.
Plan A, you have to fight and body will take a hit after surgery and then chemo. I had to google life expectancy now… only 9% survival rate. Great odds. But, I also googled some bowel cancer stories, patients in England and American had survived stage 4. So, I had to give it a good fight. Another tough message to my friends and family to say that it has spread to the liver and it will be a tougher fight.
Another funny moment, I came home to a Covid house. My sis brought it back from the wedding in Adare Manor that I was supposed to go. Dad got the Covid then mum. But, somehow, I managed to escape the Covid but I still had a cancer battle to fight.
Summer Chemo days
I had visited the dreaded Chemo Doctor, Prof John McCaffrey (aka the Incredible Hulk). He was lovely but he was also realistic with me. So, the good news, I can have 5 chemo drugs (most patients would have 3 chemo drugs) in my system because I am young and was “healthy”. So, he told me that they need to put a port into my chest before chemo would start. It’s a small disc linked to a tube (Catheter) that connects to a large vein. He also said that we will do 6 intensive chemo and review in three months. I would have chemo for one full day in the hospital then head home with a chemo pump for 48 hours. Then, the HSE would disconnect me.
May 6th (Friday!) 1st chemo day, it was surreal. I had to be in for 8.30am and I brought my mum. Went for scan for my heart. I had a lovely nurse who explained each step of the day. I had to take steroids and anti-sickness for 20mins before the chemo.
During chemo days, you would lose appetite and get very sleepy with all the drugs pumping into you. My weeks would be like this:
Day 1 to 3, chemo days, lots of drug to take…yippee. Steroids, anti-sickness, sleeping pills, immunity injection.
Day 4 to 6, Immunity is super low, extra tired and side effects will kick in.
Days 7 to 10, side effects continued and you start to get more energy and your immunity is getting back to normal.
Day 11 to 13, start to feel normal again.
Day 14, back to chemo and start it all again.
So, over the next three months, I had a fun three months of visiting the hospital every two weeks.
Chemo does take a toll on the body and the side effects are cumulative. So, the first rounds of treatment is ok. So, you can do normal things and meet friends. But it slowly gets worse. The side effects that I had sore throat, mouth ulcers, pins and needles in my hands and feet, hair thinning, constipation, diarrhoea, nausea, cold sores, mouth ulcers, fatigue, brittle nails, eye lashes growing too long, taste buds changed, dry mouth and few more that I can’t remember.
Sadly, July was the toughest month mentally and physically for me. The side effects were harder to manage and it was mental getting tougher to deal with the side effects and try to remain positive when you knew you had to go back to the hospital for more poison. So, I reset my mind every day to have a good day.
I also decided that I would raise some money (motivate me to keep on walking) so, I told my story on social media. I was blown away with the support from friends that I haven’t heard in ages and the kind messages that friends left for me. I really tried to meet up with friends but my body said no. I kept walking every day for 30 minutes twice a day. But, I was gobsmacked that we raised almost €7,000 in the end. I will always be eternally grateful for the kind donations from everyone. Thank you.
August - good cancer story
August was a great month. The bowel surgeon told me that the chemo has worked and shrunk the tumours and they can operate on my liver now. To say the least, I was in shock and delighted. I didn’t expect this news really. I had no chemo in Aug and the side effects were wearing off. The weather was good. I went on a holiday in Wexford, new scenery was great and I could eat again. I was able to drink but wasn’t really in the mood, nice to have the option.
Liver Resection Day, 30th August. oh, what a day… I had to fast and be in the hospital for 7am. I sat in the room off a ward till 1pm before I went down for surgery. The docs and nurses were lovely. I had two great surgeons going to work on my liver. Gerry McEntee (aka Thor), he had over 40 years of experience and he was the first surgeon who completed the first liver transplant in Ireland. He was retiring in October, and he was choosing his cases. So, he picked my case. Oh yeah, Minister Helen McEntee is his niece.
So, I went into the high dependency unit for a few days after surgery. Next morning, I got the best news ever, they took out all the tumours. 2 tumours were radiation ablated and they cut out the remainder of the tumours. There was a tumour super close to the vein, so they had to come up with a plan, radiation ablation took place (45 min break for them) and went back to cut out that tumour.
They were even surprised that they got all the tumours too. I had lots of visitors… all the different medical teams came to me to say hi and they were delighted for me. I was their good cancer story. I was told that I needed more chemo to ensure that any rogue cells were destroyed too. I wasn’t exactly happy to hear that but I was hoping to get out of the bed, that was my priority. It was super painful and tough.
The surgeon was right, recovery from open surgery was tougher. The tiredness was a killer. But I had good painkillers but I could only 10 min walk and going up and down the stairs. Lots of resting and watching TV and napping. I had these special protein drinks to help the recovery too. I would only be able to meet a friend for an hour then back for a nap. It was surreal.
September - more good news
I met my oncologist (aka Hulk) in late September, and he told me more good news. I won’t be going back to all of the chemo drugs. I will only have to take Oxaliplatin and 5FU over 48 hours of chemo…. But only half day in the hospital and it would be Thursday mornings and I would get my pump off on Sat mornings. This was a huge difference and great for the mental health too.
So this time around the side effects were: cold sores, pins and needles, fatigue, nausea, hair stop growing, eye lashes and eye brows falling out, sore throat but overall, it was much easier to handle this time around. I finished chemo on Xmas Eve. Then, I got the bug that everyone had, but it wasn’t too bad overall, and I was better in a week.
In January and February, I let my body recover and I started to make plans again. I even went to Lanzarote for a week, the sun was amazing. I needed that week. I am still learning the new normal for me. I still have side effects including fatigue, but I am still taking one day and one week.
I have started to find my new normal. I am back at work on a part time basis. It was super emotional to start back. I am playing sports again, slowly as the body needs to get fitter. I am heading out for dinner at night, enjoying the Six Nations and Premiership. I am starting a new journey as a cancer survivor.
At the start of my journey, I didn’t know any other bowel cancer patients. But I met up with other bowel cancer patients through social media. We organised zoom calls and we got to know each other and we have a WhatsApp group so we can support each other with different chemo questions.
Sadly, we have lost two of the original group in 2022. We have created a new online support group. We got Marie Keating Foundation to support our first awareness campaign in April #NeverTooYoung. We are organising the first Bowel Cancer Seminar for Surgeons, GPs and Patients in April. We will be organising a big social media campaign too so hopefully everyone will know the symptoms of bowel cancer.
Oh yeah, I celebrating that I am NED – No Evidence of Chemo. I am going to live with this chronic illness for the rest of the life and will be monitored every 3 months over the next two years. The doctors don’t know what to do with me… I am unique, I responded well to the summer chemo (which was usual), they didn’t expect to get all the tumours out within months of diagnosis. I know this year will be tough too, I have to process the last year but I am still standing and smiling. One day and one week at a time, that is my motto.
Update April 2023
Sadly, only few months of being NED (no evidence of disease) and no treatment.. the 2nd set of words, you dread... "it has come back". I was in shock again. Angry. Frustrated and annoyed, two new tumours in my liver came back so soon. Back to pause living, dealing with hospital appointments and new radiation therapy. I just went back to work, started to play sports again.
But, my fabulous medical team got it early and it is a minor set back. Going to have fancy new cutting edge radiation therapy on my tumours. It is amazing that the improvements in science and technology over the years.
Back taking one day at a time. Stay walking to keep fit. Catch up with family and friends. Stay working part time. This set back is another battle but I will keep fighting. Welcome to living with a chronic illness.